It is often assumed that social exclusion is a consequence of severe aphasia in the months and years after brain injury. A 2007 study in the journal Aphasiology detailed exactly how 20 people suffering from severe aphasia experienced long-term social exclusion. The time elapsed from time of stroke ranged from 9 months to 15 years, and the participants were aged between 33 and 91 years.
Types of social exclusion: The researchers grouped indicators of social exclusion into three types: infrastructural, interpersonal, and personal. Infrastructural exclusion referred to limited access to things such as employment, income, services, information, and other resources. Interpersonal exclusion referred to the participants’ relationships with family, friends, and acquaintances, as well as their membership in groups. Personal exclusion referred to feelings of isolation, loss of identity, depression, and low self-esteem.
Findings: The researchers found evidence of social exclusion across all three categories, but they also found that social exclusion is not a fixed state in that a person may be included one minute and excluded the next. This led to their conclusion that although it is often an unfortunate consequence, social exclusion is not inevitable following stroke and severe aphasia. If resources are made accessible and the people they interact with are skilled at communicating with them, a person with severe aphasia can have access to choice, opportunity, engagement, and enjoyment.
How to improve the experience of an individual with severe aphasia: Since the researchers found breakdowns in communication in everyone from family members to support workers to highly trained professionals, the researchers recommended increased training and development of skills and strategies of those communicating with an individual with Aphasia. The findings in this article are in line with other research reported over the past few weeks on our blog documenting the importance of training the loved one’s, friends and family of a person with Aphasia in order to reduce social exclusion. However, this article specifically points out the importance of teaching others to acknowledge and respect people with aphasia, as they were often treated like infants, belittled, or referred to in their presence.
Written by: Katherine Christ, honours Linguistics, Head of Research at Simone Friedman Speech-Language Services
Source: Parr, S. (2007). Living with severe aphasia: Tracking social exclusion. Aphasiology, 21 (1), 98-123.